66 posts in this topic

I'm so glad I came on the boards today and found this thread. I don't wanna hijack your Xyrem thread, DeathRabbit, but I'm still struggling in the middle of my own Xyrem story and need some encouragement.

I started 2.25g twice a night back in early October. I certainly didn't feel better the next day, or the day after that. I did have about a day and a half somewhere along the way where I actually felt pretty good. Then my doc told me to titrate up to 3g twice a night. I was scared (this med really scares me), but I did it. And I jerked awake in the middle of the night feeling like I was puking. I managed to fall back asleep but kept waking up with the same feeling for about 2h. In hindsight, I think I was just gagging on a little of the stuff and it was really no big deal. But I was totally freaked out by how I felt - you do NOT want to be awake when this stuff is in full gear.

Anyway, that experience has made me so afraid that I'm moving VERY slowly with the dose. I went back down to 2.25g twice a night and stayed there for a few weeks. But I still felt like crap. I took the plunge and tried the 3g x2 again, but this time I ended up with horrible night sweats and waking up constantly. I'm not a PWN who wakes constantly. I sleep like the dead, but it turns out I'm in REM all night and my body just never ever ever wants to wake up. Waking up all night and drenching my sheets wasn't something I could tolerate, so I dropped back to 2.25g x2 and did some more reading. I came across the various threads about supplements, etc. and started trying a few things. After some trial and error, I ended up adding an evening magnesium/potassium supplement to my routine.

Armed with what I hoped would keep my electrolytes more in balance, I went back to the 3g x2. After about 3 days, I experienced that "tiger chasing me" kind of feeling. I could not calm my body down. My mind was calm, but I was physically anxious. It was kinda awful, and I ended up having a huge fight with my Mom about this f'in disease. (She told me at one point that I had apparently not made the severity of my illness clear to her...NOT a good idea to tell someone who is already freaking out and feels that their life is falling down around them. I should have asked her if she even bothered to read the awesome brochure I'd sent her. Anyway, this is definitely a topic for another thread. he he he)

Fortunately, after another 3 days or so, the physical spaz feeling went away and...I...felt...amazing!!! All of a sudden, I was awake! I experienced what it is like to get through a whole day and not have to work at staying awake. It was the most amazing feeling - I was sooo happy. I felt like a deep darkness had finally been lifted from me. It was so so incredible I can't even find the words. I'd fall asleep peacefully, sleep all night, wake up easily and be ready to start my day. I could think and communicate at work. I could talk rationally, keep my emotions in perspective, and not dread tackling the mountain of work piled on my desk. I had the energy to do it.

That lasted for 5.5 days, and then the shoe just dropped. I was fine one minute - and the next minute I was very NOT fine. In the middle of my work Christmas party, I had what I guess I'll call a severe sleep attack for lack of any better way to describe it. All of a sudden, I did not want to be there. I did not want to talk. I wanted to be away from everyone and just sleep. I faked it until I could leave, and then the drive home was one of the worst of my life. I struggled so so hard to stay awake. I did make it home, but this marked the beginning of another period of struggling. As it turns out - TMI alert here - my monthly visitor arrived 2 days later. I was hoping against hope that it was the reason for my downfall, and I hoped that I would get better once it passed. It didn't. 10 days later, and I've been swallowed back up in the dark hole of EDS.

Two days ago, I upped my dose to 3.25g twice a night. I know it's not a big change, but I'm just so scared of this med. I see my doc on Thursday, so hopefully he will have some advice. I have found that the Xyrem nurse and my doc don't really have all the answers. Some of the things they've told me have either backfired, or I just don't agree with. I've learned a lot more by reading this forum and hearing from all of your experiences than I have from them. With that said, I hope my doc will have some good advice for me on Thursday.

For those of you who have gotten to your happy place on Xyrem - what does it feel like? Does it actually last once you get there? I am so incredibly disheartened to feel so awful again after having a few days where I felt so great.

(And, to answer your libido question...yes, I am like the sexpot of the century if I don't fall asleep instantly. I worry that I kinda freak my husband out when I get like that, but at least he's reaping the benefits! ha ha!)

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Slow and steady wins the race with Xyrem. I started Xyrem in July. I am in a good spot now and it was well worth the wait. I am getting about 4 hrs on each dose. A few nights I will wake up after 2 hrs and go back to sleep until dose 2. Then wake up 2 hrs later and go back to sleep for another 2. Then other nights, I am just up for dose 2 and that's it.

4.5 x 2 was the magic dose for me, but it still has taken a while to settle into it. The lower doses were just more unpredictable. The lower dose did not cause long and strong enough sleep to stave off the stimulating edge Xyrem has, so I only got about 2 hrs of sleep off each dose. I am glad to be past that stage.

So, for me, Xyrem is working well. I no longer take a day time stimulant. It was just too much. I am very happy being medication free during the day. Just some coffee in the morning. And my EDS has vanished. It felt so strange to get used to being awake all day long without fighting my eyelids.

I no longer feel loopy and my body does not buzz (strange feeling I had at low doses) at night. I am wobbly if I get up, but I am ok.

I would recommend not experimenting with changes, especially with 3 doses rather than 2. Be patient and persistent. Any unpleasant experiences while I was adjusting have gone away now. I am used to it and it took some time.

I just want to encourage those of you adjusting to Xyrem that the time and effort is worth it.

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I would recommend not experimenting with changes, especially with 3 doses rather than 2. Be patient and persistent.

I just want to encourage those of you adjusting to Xyrem that the time and effort is worth it.

Well said, Hank! I really have to agree on not messing with 3 doses. All I see happening there is waking up for another dose earlier than usual, with less overall quality of sleep.

Ciraeyna, I actually started a thread called Xyrem Tips and Tricks that might help you, if you feel inclined to dig it up from like 2 weeks ago. It's got every piece of advice I wish someone had told me when I started Xyrem, and some others chose to pitch in with their experiences as well. As far as how Xyrem feels now, I don't know...even two years into treatment, I feel more awake than I ever have during the day, and because of that I'm much happier and more productive than I was before. It's kind of hard to describe beyond that.

DeathRabbit, my libido did spike a bit, but I'm thinking that for me, it was less side effect, and more being actually awake and having energy, for a change.

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I'm so glad I came on the boards today and found this thread. I don't wanna hijack your Xyrem thread, DeathRabbit, but I'm still struggling in the middle of my own Xyrem story and need some encouragement.

I started 2.25g twice a night back in early October. I certainly didn't feel better the next day, or the day after that. I did have about a day and a half somewhere along the way where I actually felt pretty good. Then my doc told me to titrate up to 3g twice a night. I was scared (this med really scares me), but I did it. And I jerked awake in the middle of the night feeling like I was puking. I managed to fall back asleep but kept waking up with the same feeling for about 2h. In hindsight, I think I was just gagging on a little of the stuff and it was really no big deal. But I was totally freaked out by how I felt - you do NOT want to be awake when this stuff is in full gear.

Anyway, that experience has made me so afraid that I'm moving VERY slowly with the dose. I went back down to 2.25g twice a night and stayed there for a few weeks. But I still felt like crap. I took the plunge and tried the 3g x2 again, but this time I ended up with horrible night sweats and waking up constantly. I'm not a PWN who wakes constantly. I sleep like the dead, but it turns out I'm in REM all night and my body just never ever ever wants to wake up. Waking up all night and drenching my sheets wasn't something I could tolerate, so I dropped back to 2.25g x2 and did some more reading. I came across the various threads about supplements, etc. and started trying a few things. After some trial and error, I ended up adding an evening magnesium/potassium supplement to my routine.

Armed with what I hoped would keep my electrolytes more in balance, I went back to the 3g x2. After about 3 days, I experienced that "tiger chasing me" kind of feeling. I could not calm my body down. My mind was calm, but I was physically anxious. It was kinda awful, and I ended up having a huge fight with my Mom about this f'in disease. (She told me at one point that I had apparently not made the severity of my illness clear to her...NOT a good idea to tell someone who is already freaking out and feels that their life is falling down around them. I should have asked her if she even bothered to read the awesome brochure I'd sent her. Anyway, this is definitely a topic for another thread. he he he)

Fortunately, after another 3 days or so, the physical spaz feeling went away and...I...felt...amazing!!! All of a sudden, I was awake! I experienced what it is like to get through a whole day and not have to work at staying awake. It was the most amazing feeling - I was sooo happy. I felt like a deep darkness had finally been lifted from me. It was so so incredible I can't even find the words. I'd fall asleep peacefully, sleep all night, wake up easily and be ready to start my day. I could think and communicate at work. I could talk rationally, keep my emotions in perspective, and not dread tackling the mountain of work piled on my desk. I had the energy to do it.

That lasted for 5.5 days, and then the shoe just dropped. I was fine one minute - and the next minute I was very NOT fine. In the middle of my work Christmas party, I had what I guess I'll call a severe sleep attack for lack of any better way to describe it. All of a sudden, I did not want to be there. I did not want to talk. I wanted to be away from everyone and just sleep. I faked it until I could leave, and then the drive home was one of the worst of my life. I struggled so so hard to stay awake. I did make it home, but this marked the beginning of another period of struggling. As it turns out - TMI alert here - my monthly visitor arrived 2 days later. I was hoping against hope that it was the reason for my downfall, and I hoped that I would get better once it passed. It didn't. 10 days later, and I've been swallowed back up in the dark hole of EDS.

Two days ago, I upped my dose to 3.25g twice a night. I know it's not a big change, but I'm just so scared of this med. I see my doc on Thursday, so hopefully he will have some advice. I have found that the Xyrem nurse and my doc don't really have all the answers. Some of the things they've told me have either backfired, or I just don't agree with. I've learned a lot more by reading this forum and hearing from all of your experiences than I have from them. With that said, I hope my doc will have some good advice for me on Thursday.

For those of you who have gotten to your happy place on Xyrem - what does it feel like? Does it actually last once you get there? I am so incredibly disheartened to feel so awful again after having a few days where I felt so great.

(And, to answer your libido question...yes, I am like the sexpot of the century if I don't fall asleep instantly. I worry that I kinda freak my husband out when I get like that, but at least he's reaping the benefits! ha ha!)

Yeah, the anxiety for me is subsiding too. It's now downgraded to general unease, haha. I think I'll stay at the 3.75 through the holidays, just so I don't like go nuts and burn everyone's presents or something, haha.

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How long do you Xyrem takers normally sleep? Before Xyrem, I was an 8-9 hours type of guy. Now, It's hard to get much more than 6. How do you guys do your dosing? It seems like I will wake up 3 hours after my 2nd dose no matter what. So I'm getting higher quality sleep, but less of it. I won't say it's zero sum gain, but right now, it's not seeming to be worth the side effects unless I can extend my sleep time. I need at least 7.5 because that's how much I used to get before the coming of the derp.

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How long do you Xyrem takers normally sleep? Before Xyrem, I was an 8-9 hours type of guy. Now, It's hard to get much more than 6. How do you guys do your dosing? It seems like I will wake up 3 hours after my 2nd dose no matter what. So I'm getting higher quality sleep, but less of it. I won't say it's zero sum gain, but right now, it's not seeming to be worth the side effects unless I can extend my sleep time. I need at least 7.5 because that's how much I used to get before the coming of the derp.

When it comes to starting Xyrem, sleep is all about quality and not duration. Eventually, you will have both. This is how it made sense to me: I was so accustomed to functioning with such low sleep efficiency, 5-6 hours of Xyrem sleep was better quality than a full night of Narcolepsy sleep. It is like someone suffering from starvation- they need to work up to a steak and potatoes. Let your body adjust to the quality of Xyrem sleep and the duration will work itself out over time.

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When it comes to starting Xyrem, sleep is all about quality and not duration. Eventually, you will have both. This is how it made sense to me: I was so accustomed to functioning with such low sleep efficiency, 5-6 hours of Xyrem sleep was better quality than a full night of Narcolepsy sleep. It is like someone suffering from starvation- they need to work up to a steak and potatoes. Let your body adjust to the quality of Xyrem sleep and the duration will work itself out over time.

Oh, I'm sticking with it for sure. Because if I give up on this there's nothing left to try and my life is never going to get better. So I'm gonna give this every chance to work and if it doesn't, well, then judging by the rate of my deterioration, the rest of my life will be *BEEP*salt.

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How's your sleep hygiene? I too could only squeak out 6 hours, till I forced a pretty major overhaul of my daily/nightly routine. I get about 7.5 hours a night now, sometimes more if I've been extra good.

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How's your sleep hygiene? I too could only squeak out 6 hours, till I forced a pretty major overhaul of my daily/nightly routine. I get about 7.5 hours a night now, sometimes more if I've been extra good.

About as good as it can be when you've got a roommate that wakes up at 5AM, lol. Sometimes, I think my issues would be a lot better if I lived in a cabin in the woods. I may just have to start sleeping earlier and waking up earlier to sync myself with the world, because cars start blasting by my apartment by 6:30

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How's your sleep hygiene? I too could only squeak out 6 hours, till I forced a pretty major overhaul of my daily/nightly routine. I get about 7.5 hours a night now, sometimes more if I've been extra good.

The lower doses make it very very hard no wait impossible to get the full 8 hours... until I got to 4.5 I was complaining daily on here about getting 5, 6, 4 hours of sleep a night. Now I get a solid 8 sometimes 7.5 if I didnt get to bed at the right time.

The lower doses are very unsteady... some nights I panicked my way through the first dose, or sleep only an hour, it was a roller coaster for sure. I woke with the shakes and just felt like yuck! Magnesium works well for the shake BTW.

Once you get to 4.5x2 all the nastyness of Xyrem goes away, well except the night sweats. With the night sweat I notice they are worst certain times of the month, and if I ate something heavy or salty or had a glass of wine. Our skin is the livers back up... while on Xyrem our livers are working to digest that so our skin takes over... so the reason we sweat is just our bodies way of detoxing from the day. When I take my second dose I change my T-*BEEP* and drift right back to sleep. I also found cotton sheets are not the way to go... they stay damp longer, the sheet I got dry super fast!

Like Hank I have decided to forgo the Stimulants... I just cant tolerate them.

For me EDS is still there but doesnt hit me nearly as hard... the sleep attacks are more like walking through fog rather then trying to walk through a brink wall. Different times during my cycle are definitely hard. I think this is due to iron levels, hormones, as well as other factors. I am trying to learn and take cues from my body to see what I can do to fix the rough days.

For anyone tirating I will echo what others have said... go slow and steady, dont go messing with the doses. Also the bad nights are caused by your own mind not the Xyrem. Try staying calm and telling yourself that its not going to hurt you... the more you remind yourself that everything will be okay the less bad nights you will have. If you go to bed thinking of the bad night before you will again have a bad night! I know this from personal experience. The more I let myself freak out the worse everything was! Now if I start thinking the wrong way. I stop in my tracks and tell myself to stop, and to think warm thoughts and then drift off to sleep.

Dont give up, the light is at the end of the tunnel you just have to crawl to get there!

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When it comes to starting Xyrem, sleep is all about quality and not duration. Eventually, you will have both. This is how it made sense to me: I was so accustomed to functioning with such low sleep efficiency, 5-6 hours of Xyrem sleep was better quality than a full night of Narcolepsy sleep. It is like someone suffering from starvation- they need to work up to a steak and potatoes. Let your body adjust to the quality of Xyrem sleep and the duration will work itself out over time.

EXACTLY! "like"

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About as good as it can be when you've got a roommate that wakes up at 5AM, lol. Sometimes, I think my issues would be a lot better if I lived in a cabin in the woods. I may just have to start sleeping earlier and waking up earlier to sync myself with the world, because cars start blasting by my apartment by 6:30

Ah, fair enough. Well the good news is, you might be able to join the consensus of people who move up to 4.5g and it works just fine without changing anything; the other good news is, if you're weird like me and still manage only 6 hours after a few months on 4.5g, you've got more options.

And hey, you'd be surprised how un-restful cabins in the woods can be. They creak in creepy ways at night, and they've got some loud-ass birds in the morning

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Ah, fair enough. Well the good news is, you might be able to join the consensus of people who move up to 4.5g and it works just fine without changing anything; the other good news is, if you're weird like me and still manage only 6 hours after a few months on 4.5g, you've got more options.

And hey, you'd be surprised how un-restful cabins in the woods can be. They creak in creepy ways at night, and they've got some loud-ass birds in the morning

You know, if it weren't for my love of music, I'd seriously consider deafening myself j/k but the thought of not ever hearing anything to wake me up is so tempting.

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You know, if it weren't for my love of music, I'd seriously consider deafening myself j/k but the thought of not ever hearing anything to wake me up is so tempting.

I know right? I live in an apartment with train tracks just across the street, and somehow never quite got used to it. Nine years later, the horn at 3:30 AM still scares the snot out of me on a regular basis. On the upside, it makes sure I never miss my second dose, haha.

All joking aside though, white noise is awesome for that. If you're not into "traditional" white noise, a cheapo table fan with a couple of power settings works just as well. I've got a little one I picked up for like 20 bucks at Target, and that pointed at the wall on "low" drowns out everything but the train.

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I know right? I live in an apartment with train tracks just across the street, and somehow never quite got used to it. Nine years later, the horn at 3:30 AM still scares the snot out of me on a regular basis. On the upside, it makes sure I never miss my second dose, haha.

All joking aside though, white noise is awesome for that. If you're not into "traditional" white noise, a cheapo table fan with a couple of power settings works just as well. I've got a little one I picked up for like 20 bucks at Target, and that pointed at the wall on "low" drowns out everything but the train.

I have an app for my android, but it's difficult to get it loud enough to drown stuff out, but not loud enough to keep me awake.

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I have an app for my android, but it's difficult to get it loud enough to drown stuff out, but not loud enough to keep me awake.

You young'uns and your newfangled tech-knowledge-y! Not really, I'm just stubborn and sorta poor lol. I'm bad enough about texting, I don't trust myself with apps and an internet connection.

Even a little bit of white noise can help, though. I probably shouldn't have used to the phrase "drown out," as I can still hear a lot of what goes on if I'm awake (and you definitely don't want it drowning out your smoke alarm,) but when I'm asleep, everything else is muffled enough that it doesn't wake me. As you said, it's kind of a hard balance to strike noise-wise, but it might be worth playing with to see if it helps.

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I'm glad this thread exists! Last night was my first night on Xyrem at the 2.25g dose. I didn't sleep much and just felt sorta high. I feel disgusting today (extremely exhausted, headaches, etc). I'm glad I'm not alone in having a bad first night experience. I'm just ready for it to get better!

I believe my doctor wants me to go up to 4g and stop. Is that a common dosage? It just seems like a lot of people go higher than that.

And I'm sorry if that's already been addressed. I can't focus long enough to read everything here right now. How sad is that?

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Congrats on taking the plunge! 4g isn't super uncommon; most people go from 3.75g to 4.5g, which is considered the max dose, but some people (like me) don't react so well to such big jumps in dosage. You can always check back with him when you get close to that, and make sure that's what he meant.

Let us know how it continues to go; hope you start feeling better soon!

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Congrats on taking the plunge! 4g isn't super uncommon; most people go from 3.75g to 4.5g, which is considered the max dose, but some people (like me) don't react so well to such big jumps in dosage. You can always check back with him when you get close to that, and make sure that's what he meant.

Let us know how it continues to go; hope you start feeling better soon!

I guess I made it sound like I'm going immediately from 2.25 to 4, but it's gradual. I'm on 2.25 for two weeks, and then I increase gradually each week until I'm up to 4.

And thanks!

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Oops, I wasn't entirely clear either lol. I meant that you have a little while to figure it out, or check in, so you know for sure he meant you to end at 4g. Yeah, going from 2.25 straight to 4g would be a bit of a shock

I did have trouble moving my doses up even that gradually; they had to knock me from 4.5g back down to 4g after the first couple of days at the former, because it just wasn't playing nice with me. Sorry for the confusion!

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My doc had me go up to 3.75g two days ago (from 3.0g for 2 weeks, and 3.25g for a couple days). I think going up is the right thing to do, but I just don't feel well. I'm kinda okay when I wake up, but then I start feeling lousy. I have no appetite, and if I manage to eat I can't put much down. I feel heavy in my chest, kinda like it takes more effort to breathe or something, and my back really really hurts. I'm also getting headaches, usually towards evening. I can't even really describe most of what I feel - it's just "unwell."

I'm only getting about 2.5h sleep on the first dose and around 3h on the second. I'm sleeping like the dead when I am asleep, so I know it's working. But I'm still getting pretty tired by the afternoon and really dragging by night.

Did any of you go through this kind of "feeling unwell" stuff? I know people say they have to adjust to Xyrem, but I haven't read anything more specific - or at least I don't remember if I read it. It sure would help to know if any of you Xyrem success stories experienced stuff like this and got to the other side!

With how I feel right now, the thought of going to 4.5g is really unappealing.

Thanks so much for this thread and all the great input,

Cira

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My doc had me go up to 3.75g two days ago (from 3.0g for 2 weeks, and 3.25g for a couple days). I think going up is the right thing to do, but I just don't feel well. I'm kinda okay when I wake up, but then I start feeling lousy. I have no appetite, and if I manage to eat I can't put much down. I feel heavy in my chest, kinda like it takes more effort to breathe or something, and my back really really hurts. I'm also getting headaches, usually towards evening. I can't even really describe most of what I feel - it's just "unwell."

I'm only getting about 2.5h sleep on the first dose and around 3h on the second. I'm sleeping like the dead when I am asleep, so I know it's working. But I'm still getting pretty tired by the afternoon and really dragging by night.

Did any of you go through this kind of "feeling unwell" stuff? I know people say they have to adjust to Xyrem, but I haven't read anything more specific - or at least I don't remember if I read it. It sure would help to know if any of you Xyrem success stories experienced stuff like this and got to the other side!

With how I feel right now, the thought of going to 4.5g is really unappealing.

Thanks so much for this thread and all the great input,

Cira

Yes, "unwell" is a good description. I had some additional stressful events and some vitamin deficiencies at the same time so I did not know what to attribute my unwell feeling. Xyrem was my best hope so I was/am reluctant to attribute anything bad to Xyrem.

However, I can honestly say Xyrem has been a quality-of-life saver for me. 4.5 x2 has been a blessing. It has taken me some time to get there, but it has been worth it. I no longer need a stimulant during the day. I just enjoy coffee in the morning and that is it. This change did not happen over night. I did begin to notice a difference week by week. It was awkward balancing the amount of stimulant as my need for it decreased. There were many days where I felt overstimulated and I did not like that at all, so I began reducing.

I am thankful to be at the point where Xyrem has chipped away at my sleep debt. I am getting sufficient restorative sleep each night- some better than others. I feel naturally awake during the day- not artificially propped up. I did not know it was possible to feel this way- and I am just starting to trust that I am feeling well. To be honest, this "well" feeling was so foreign to me, it thought there was something wrong. It was like going from snow-shoes to ice skates (for lack of a better analogy). I am accustomed to living with so much more resistance that feeling well was startling.

Glad to say, I am getting used to it. I was always fighting my eye lids- then suddenly I was not. It actually felt like there was something wrong with my eyes- as though my ever-present eyelids were gone missing. I remember years ago finally getting my braces off my teeth. My teeth felt so HUGE and SMOOTH after the braces were gone. In a similar way, now that my EDS is gone, feeling awake has felt so foreign- it is just hard to describe. When we first got a flat screen HD TV, everything seemed to big and clear and sharp. We had lived with the old TV for years and always liked that, but HD was sooo much more. So, I feel like the world from my perspective has just been upgraded to High Definition with surround sound.

I hope this makes sense, it really is hard to describe. I hope you will get to your own place that is almost indescribable.

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I wish I could withdraw from society. I feel like I could be fine if I slept from 8AM to 4PM. Here, I am, once again, awake at 3AM. So glad my Christmas is going to be ruined by this bull*BEEP*. :angry:Hope you all have a much more merry Christmas than mine!

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Sorry to hear you had a crappy night. I hope the rest of your day got a little better. I ended up sleeping for 2h right after we did presents, since I was too tired to do much else. It sucks - as a Mom, it's really depressing to sleep away part of Christmas Day when the rest of my family is having fun with all their gifts. Guess I'm feeling pretty sorry for myself today.

I just dunno about this Xyrem stuff. I find that every day and every night is different, so I never know what to expect nor do I have a chance to learn how to cope because it's so inconsistent. I am hoping that it's because 3.75g x2 is still the "middle" dose. I know you guys said it got better at 4.5g x2, but it's hard to believe all this *BEEP* is going to go away. I feel like 3.75g x2 has done absolutely NOTHING for me. I had a few good days on a lower dose, but so far I'm really disappointed with this one.

Am I doing something wrong??? I feel like I'm being as consistent as I can - I go to bed at exactly the same time every night. No matter how tired I am (and some nights I'm practically falling over), I stay up til my appointed bedtime. I eat supper about 5h before my bedtime, and if I have anything after that it's a VERY light snack (like part of an apple or a mug of hot chocolate) that I finish at least 2h before my bedtime. Some nights, I can feel the med working shortly after I take it. Other nights, nothing. Last night, I felt it but all it did was make me awake and talkative. Ugh. I finally fell asleep about an hour and a half after I took it. And I woke up about 2hours later, awake, so I took the 2nd dose. That got me about 3 more hours. I don't know about the rest of you guys, but the Xyrem nurse is wrong as far as I'm concerned. 6 hours or less of "good" sleep is still not enough to make me feel okay. I feel like crap, and all I can think about is how I need to sleep again.

As for my little snack in the evenings, I am really hungry by the time I go to bed if I don't eat *something*. And whatever caffeine is in the hot chocolate I'm not worried about since caffeine has never kept me awake. Like someone else said, I could probably drink a couple energy drinks and still fall asleep.

So...what gives? Is my snack screwing me up? Should I be doing something different to get this stuff to last more than 2.5-3hours? Or am I just gonna have to be patient and hope that 4.5g x2 will make it all better? What kind of bedtime routines do you guys have? I'm obsessing over everything, trying to get this damn stuff to work. It's all driving me crazy and none of it seems to help gain me any consistency.

Not ready to throw in the towel just yet, but damn it - I'm sick and tired of being sick and tired.

On a happier note, and with sincere good wishes to you all: Merry Christmas and here's hoping 2013 will be good to us!

Cira

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Sorry to hear you had a crappy night. I hope the rest of your day got a little better. I ended up sleeping for 2h right after we did presents, since I was too tired to do much else. It sucks - as a Mom, it's really depressing to sleep away part of Christmas Day when the rest of my family is having fun with all their gifts. Guess I'm feeling pretty sorry for myself today.

I just dunno about this Xyrem stuff. I find that every day and every night is different, so I never know what to expect nor do I have a chance to learn how to cope because it's so inconsistent. I am hoping that it's because 3.75g x2 is still the "middle" dose. I know you guys said it got better at 4.5g x2, but it's hard to believe all this *BEEP* is going to go away. I feel like 3.75g x2 has done absolutely NOTHING for me. I had a few good days on a lower dose, but so far I'm really disappointed with this one.

Am I doing something wrong??? I feel like I'm being as consistent as I can - I go to bed at exactly the same time every night. No matter how tired I am (and some nights I'm practically falling over), I stay up til my appointed bedtime. I eat supper about 5h before my bedtime, and if I have anything after that it's a VERY light snack (like part of an apple or a mug of hot chocolate) that I finish at least 2h before my bedtime. Some nights, I can feel the med working shortly after I take it. Other nights, nothing. Last night, I felt it but all it did was make me awake and talkative. Ugh. I finally fell asleep about an hour and a half after I took it. And I woke up about 2hours later, awake, so I took the 2nd dose. That got me about 3 more hours. I don't know about the rest of you guys, but the Xyrem nurse is wrong as far as I'm concerned. 6 hours or less of "good" sleep is still not enough to make me feel okay. I feel like crap, and all I can think about is how I need to sleep again.

As for my little snack in the evenings, I am really hungry by the time I go to bed if I don't eat *something*. And whatever caffeine is in the hot chocolate I'm not worried about since caffeine has never kept me awake. Like someone else said, I could probably drink a couple energy drinks and still fall asleep.

So...what gives? Is my snack screwing me up? Should I be doing something different to get this stuff to last more than 2.5-3hours? Or am I just gonna have to be patient and hope that 4.5g x2 will make it all better? What kind of bedtime routines do you guys have? I'm obsessing over everything, trying to get this damn stuff to work. It's all driving me crazy and none of it seems to help gain me any consistency.

Not ready to throw in the towel just yet, but damn it - I'm sick and tired of being sick and tired.

On a happier note, and with sincere good wishes to you all: Merry Christmas and here's hoping 2013 will be good to us!

Cira

I know that feel. It seems like the Xyrem has had a completely different effect on me than most ppl. Many anecdotes said it was like knock out drops or something. I mean it has to have a more pronounced effect on some or it wouldnt have bee na very good date rape drug. Evidently, if someone slipped some GHB in my drink, I'd hardly lose a step. I'm gonna be patient like Hank said and continue on for now. I'm at the 4.5 now and I will stay at this dose for a month. If I feel no positive change by then, I'm going back to downing 5htp with a double shot of liquor. That made me sleep. I suppose horse tranqs are out of the question for N? I need something that just completely throttles me. Damn my weird stupid brain and its bizarre reaction to drugs.At this rate, I feel like I'm not going to make it thru 2013 without a complete breakdown. And those tend to be career killers.

On the caffeine note, I would suggest giving it a trial go with no caffeine for a few days. I've noticed that caffeine has a more pronounced effect on me with the Xyrem for whatever reason. In fact, the first week I was on the stuff, a coke would give me a panic attack. I'm gonna get rid of caffeine too methinks, just to give this every possible chance to work.